Make your live is better

Make your live is better.

Your Fammily is Your live

Your Fammily is Your live.

Care your future

Be healty .

This is default featured post 4 title

Go to Blogger edit html and find these sentences.Now replace these sentences with your own descriptions.

This is default featured post 5 title

Go to Blogger edit html and find these sentences.Now replace these sentences with your own descriptions.

Tuesday, January 31, 2006

J-tube fixed, Auth goof, Different room, Brownie Fairy

Denise and the caregiver we hired went from the SNF to Huntington Hospital at 10:30 this morning to have the j-tube replaced. While there, the caregiver called to say that they might just send Denise back to the SNF without doing the procedure because they didn't have an authorization for it. My nurse aunt made some phone calls while I was at work and eventually the authorization situation was resolved. They were able to simply ream out the j-tube to unclog it instead of having to remove & replace it. So that was nice that it was so simple. Then back at the SNF by mid-afternoon. About five hours taken up for a fifteen minute procedure. Initially I was told that I'd have to provide the transportation for Denise, or the facility could provide it, but I'd be billed. After explaining the circumstances (I'm at work, no one's available). I was very happy that the case worker was able to get the SNF to take care of transportation. That was without having to mention that the feeding tube may not have clogged had it been going 24 hours and flushed every 4 hours as per GI specialist recommendation from the hospital last week. Anyway, bottom line is that they sent Denise back to the SNF with instructions to flush the tube more frequently, especially if 24 hour feedings cannot happen for some reason.

She tried to eat some soft food tonight. The speech therapist fed her himself. Denise threw up right after trying to eat some food. She also threw up shortly before the food came into the room. On a positive note, that was the first time she threw up in about a day & a half. Not bad, considering how things have been going. Perhaps she was just exhausted after a long hard day of sitting up most of the time, and not having any food going through her for over a day.

I bet some of you are wondering why Denise needs a speech therapist, as I was. She talks fine. But a speech therapist also deals with swallowing and other issues that might be beneficial to Denise. He's a great guy and Denise likes him a lot. She also said her other therapists for PT and OT are really nice. Working out is still her favorite part of the day. Yesterday she walked across a small room using regular cane (not a quad cane this time)! Today during the time at the hospital, she got tired of the wheelchair. But her walker was at the SNF. So the caregiver held her by the arm and Denise walked around that way. Big milestone!

She has a different room tonight. She was moved from a room with three beds that shares a bathroom with another three-bed room. The roommates really liked to have the TV going as much as possible, as loud as possible. The room she has now is only two beds, and the bathroom is only used by the patients in that room. The TV is one that someone abandoned and hardly works, so it's turned off. Bittersweet, but Denise's roommate is a woman that had a stroke and is incapable of speaking or getting up to use the restroom. That means that the chances of infection through that means are cut dramatically. Her family has a radio quietly playing on a Christian station to "provide some company." That programming is just fine with Denise. The only downside is that the rooms tend to get stuffy. When the sliding glass door is opened, the smell of cigarette smoke sometimes wafts in from the patio just outside. The smell makes Denise nauseated. Anybody have any input about air purifiers?

The other night somebody from my school provided us a pan of really good brownies. But Gracie doesn't know that. She thinks there's a "Brownie Fairy" that sometimes leaves her a piece of a brownie while she's in the bathtub after dinner. No, I don't mind having fun at the expense of my children. I've been immensely blessed to have a friend staying with us for a few weeks to run interference for me. As much as I feel like I'm drowning, I'd be much worse off if he weren't around. Anyway, he's in on the Brownie Fairy bit. Tonight, we ratcheted up the Brownie Fairy gag to a new level. Gracie asked if I thought the Brownie Fairy might visit again tonight. I said I didn't know. I surreptitiously dialed our home phone from my cell phone, answered the house phone, and pretended to have a conversation with the Brownie Fairy. Then Gracie wanted to talk to the Brownie Fairy. Uh-oh. Thinking quick, my friend grabbed one of the extension phones and went into another room, where he disguised his voice and talked to Gracie. But he did a James Brown impersonation while talking to her. "Ow! Hey! Papa Got a Brand New Pan! Yeah!" He was the James Brownie Fairy, the hardest working man in fairy business.

Monday, January 30, 2006

Transport, J-tube update, Neat Gracie story

Here's an update on Denise's clogged j-tube:
They'll transport her to Huntington to have another j-tube reinserted tomorrow (Tuesday) at 10:30am. In the mean time, the doctor at the SNF is putting Denise on IV fluids. I assume that this means that there will not be any feeding going on. We're trying to see if the nurses can also keep trying to get some water through that clog. I remember that with the g-tube, they used to pour Coca-Cola down the tube... the acid in that soft drink would eat through the residue in the tube. Hmm... maybe I'll ask about that for the j-tube. Dumb thought, but what the heck. Also, when the feedings do restart through the tube again, we're going to push for continuous 24-hour feedings so that everything stays moving and lessens the likelihood of a clog.

This just in: The case manager is anticipating a two-bed room at this facility to open up tomorrow (Denise is sharing a room with two others, bathroom with five others). But there's also a possibility of a private room opening up at that Foothill facility that she was supposed to go to last week. The fewer people sharing the room & bathroom, the fewer the chances are for infection (very important). But we'd have to start all over again with getting people familiar with Denise's case, double & triple-checking paperwork, etc. Also, the Foothill facility is farther away. The place she's at now is between home & work, and only five minutes from where we live. To me, the lower probability of infection trumps the headache of paperwork, peoplework, and commuting. Thinking outside the box (and looking at the bottom line from the point of view of the HMO's bean counters), maybe it's possible to keep Denise at home with RN-level help to deal with the PICC blood draws, j-tube flushing, etc. Again, dumb idea, but who knows? We need wisdom, wisdom, wisdom!

Something impressive neat happened with Gracie over the weekend, and I can't believe that I forgot to type about it earlier this morning. This happened the first time I tried to take Gracie to visit Denise. Everyone in the lobby and down Denise's hallway was in a wheelchair. Many were slumped over in their chairs, some had tongues swollen out of their mouths, a woman was sitting in a chair seemingly convulsing and spacing out (for lack of understanding about what condition she has, that's the best description I can think of). Gracie was scared of the appearances of many of the people there. It didn't help that many residents, upon seeing Gracie, rolled over to her for a visit, some of them reaching out to her, a few unable to smile, some unable to speak intelligibly. Gracie was startled, clung to me, started sobbing, and so I took outside, where she started full-on crying. We went home.
Once there, I pulled out a children's book that one of Denise's friends gave us. It's called "Someone Special, Just Like Me" and it deals with physical disabilites. We talked about how the people that we saw are sick, like mommy. They're mostly older and sick in different ways, but they're still people that God loves, and we should be loving toward them, too. They can be happy, sad, and just like mommy, they probably are excited to see little kids like Gracie. They were trying to be friendly. Some of them are so sick that they can't smile or speak, even though they would really like to.
We went back again with Jacob later. The lobby was fairly empty and my mom was there, so things went well. Jacob, by the way, seems to be fine during the visits. He's probably thinking, "Big deal... I too am rolling around, can't talk, drool, and need diapers." Moving right along... Another day when I brought Gracie, one of her little friends and her mom were visiting Denise. Gracie & the other little girl were peas in a pod, and all went well... they sort of distracted each other from the residents. The last time I brought Gracie, the lobby was full, and Gracie was all smiles with everyone. She actually seemed to dig all the attention. There's a waiting room with an aquarium in it, and Gracie got a kick out of finding a large fish that lurks at the bottom. One of the residents that Gracie was scared of during the first visit rolled in and tried talking to Gracie. I was able to tell Gracie what the woman was trying to say to her. I told the lady that Gracie was enthralled with the big fish at the bottom of the tank, and I asked Gracie if she wanted to point out the fish to the lady. Gracie walked across the room to the lady and took her hand, pulling with all her might to get the lady rolling over to the aquarium, smiling and excitedly telling her to hurry up before the fish hides somewhere where they can't see it anymore. Ever since, she knows no strangers there.

J-tube clogged, transporting back to Huntington

I *just* got a call stating that Denise's j-tube had clogged and they are transporting her back to Huntington to have it reinserted. Possible causes for the clog include fiber in the feedings and possible lack of sufficient flushing of the tube. I assume that she will then come back to the SNF after the procedure, but I'm not sure. I'm awaiting a call with more details. Looks like another long day ahead.
*sigh*
And when I think I'm exhausted and can't deal with this anymore, I just think of what Denise has gone through to put things into perspective.

Walked with quad cane

Sorry for not posting for a few days. This transfer kept us on our toes and very busy with changes to paperwork, talking to doctors, caregivers, double-checking and triple-checking everything... Overall, Denise is making progress. The following is the very short version of what went on. And it's still a long read...

Wednesday night was not good for Denise- no air mattress and the bed didn't work correctly, lots of new noises all night.Vomiting and pain. She was one tired cookie on Thursday. Thursday morning Denise was seen by her new SNF doctor. New place- New doctor. HMO's don't want us to get used to anyone. Because he didn't know Denise from Adam or Eve before Thursday morning the orders needed to be reviewed by us and tweaked a bit to fit Denise's special needs. She's a very special gal. Friday we spent putting the new orders in place with the
staff who seem to be getting to know Denise and appreciating how special she is.
Denise is now getting PT(physical therapy) twice a day 6 days a week, OT( occupational therapy) once a day 5 days a week. Friday she started putting on real clothes, not the stylish gown provided. Street clothes make us all feel a little more normal. Friday she walked quite a ways (150-200 feet) to the PT room where she then used a quad cane and walked very well with it. Saturday she walked to and from the PT room and later out to the patio. The PT on Saturday happened to be a therapist who worked with Denise when she was in the ICU at Methodist on respirators and many machines and tubes. She was amazed at how good Denise looked and how far she has come. She got out of bed and to the commode by herself with the OT Friday. This is a very independent step when your spending your days in a SNF. She is able to help pull herself up in bed and turn herself more now also.
Unfortunately she is still having problems with vomiting. They are trying to aspirate from the G tube very shift to try to get the gastric acid out before it comes up. Aspirations were ordered every four hours, but that is a bit much to expect from the SNF situation. We just started doing it and not sure if its helping that much yet. Friday she was evaluated by the Speech Therapist for swallowing. The G tube was aspirated and she had Droperidol for nausea 30 minutes before her eating test. She sat at the side of the bed and ate a few bites of rice, more bites of ice cream, some applesauce, and drank some mystery juice (none of us was sure what it was). She sat up for another 15 minutes after eating. Even though she had some vomiting later during the night that food stayed down. The speech therapist will discuss recommendations with the doctor Monday and she will hopefully start getting one meal a day.

Saturaday morning she vomited 4 times from 7 am to 12:30pm, but did better the next 3 1/2 hours. Her J tube feeding was set for only 16 hours a day instead of the 24 hours a day at Huntington on Thursday but was increased to 75 cc per hour for 22 hours a day on Friday night at 9:30pm. That will now deliver just shy of 2000 calories a day... what she needs to gain weight. Denise said she had a loose stool on Thursday. She had two hard stools Sat afternoon. For those familiar with tube feedings it usually can cause diarrhea so this is unusual. For those not familiar with tube, it's just more gross stuff to read about.

She got a shower on Saturday. Wednesday and Saturdays are shower days for bed Cs they tell us. She just told us it felt good.
Labs done Thursday am - Creatinine 0.4 alittle low. Sodium 133-low, Potassium 4.6 normal, Chloride 95 low, Calcium 9.7 normal, Albumin 2.2 low,SGPT 37 above normal but nowhere as high as back at Methodist, Alk Phos 312 high, Magnesium 1.8 normal. Her Hb was 9.8. On Sat early am her Hb was 9.2. Plts 553. She had the Red Blood cell growth factor Tuesday at Huntington when it was 8.7. She was not getting iron when on TPN she is now getting some in her feeding but probably is behind in iron stores. We are checking if the Iron panel was done at Huntington. Friday night we got a scary call at 11pm that her HB was 7.5 and she might be transfered to a acute care facility. It turned out on recheck to be 9.2. My aunt said it was something about waste in the PICC line... I'm so tired I didn't have time to learn about that. But the medically-inclined that are reading this can post or email explainations later on.

Denise has had a private caregiver every 12 hours since Thursday 7pm and will continue until 7pm Monday if things are going well. The nurse aunt recommended this, though expensive, it will help Denise through a tough transition of an acute care setting to the much sparer staff setting of a SNF and assure me that her needs are being met when I can't be there night or day. Though the staff is caring and concerned about Denise, the reality is that the staffing ratios at a SNF makes it difficult for them to always meet Denise's needs in as timely a fashion as they would like.

Thursday, January 26, 2006

Moved to Country Villa SNF last night

Very long story very short:
Denise was moved to a new venue last night.
Country Villa Monrovia
615 W. Duarte Rd.
Monrovia CA 91016 (corner of Duarte Rd. & Tenth Ave/Alamitas Ave.)
626-358-4547 (ask for Denise Williams)
You can email her at pullingfordenise@yahoo.com.
If you can go by & visit, please do so. Bring a book to read in case she's sleeping. The staffing is a little thin by comparison to what she came from, so a little extra attention for her during the daytime would be appreciated (we have someone lined up to help through the first few nights 7pm-7am). At the moment, we don't have a schedule of her therapy sessions. There's a very nice courtyard that she'd probably like to go wheeling through in her chair.
More details later on.

Wednesday, January 25, 2006

Denise moving to SNF in Momrovia 5pm TODAY

Typical.
I checked my voice mail at 3pm when school got out and found that they want to move Denise to a different nursing home in Monrovia (not Glendora) at 5pm today. Of course, I've not had an opportunity to even check this place out, nor ask about any other possible options. The regular hospitalist that's been working with Denise is off today. Needless to say, my aunt will be on the phone going over the details for us. I've just scrambled to find someone to take Gracie home (I didn't have anyone to stay with her at home today, so she just stayed with me at work... I don't think she minded too much). And hopefully some of the regular people available in the evenings will be available tonight.
Once again, this is nuts.
Pray.

No transfer to SNF yet, Hemoglobin low

The transfer to the SNF that we anticipated yesterday didn't happen. Denise's hemoglobin went to 8.7, so procrit was given. It turns out that she did have a private room lined up at the SNF. I'm grateful that there was that option, not only for the peace & quiet, but also due to infection concerns. Anyway, as the day went on, that room became unavailable. In fact, the SNF rep in charge of transfers said that there were no open beds. I assume that means she'll stay in the hospital a little longer. If so, hopefully she can stay on the same floor she's on. The nursing care there is very attentive. There were some more happenings, but I don't have time to go into them. I don't know what's going on today. However, Gracie does have an ear infection (not contagious), my aunt left last night, and my mom & dad are not feeling well (mom's sick, dad's on chemo). So it would make sense, given the trends, that today would be selected as the day to move her, while everything else in my little world is busy as well.

Related Posts Plugin for WordPress, Blogger...